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A collaboration of Anthem, Inc., CancerCare, Caregiver Action Network, Indiana University and Michigan State University.

Who Am I Now?

“Who am I now that I am not a caregiver and mother?”

For all of his eight years, Carolyn cared for her son Billy, a hydrocephalic child who was ventilator-dependent and had a seizure disorder. He also had a stomach tube, thyroid problems, and brittle bones. Developmentally, he remained at two or three years old. Carolyn had 16 hours of nursing care each day through a state waiver program, but Billy could never be left alone. Caregiving was intense. He was in critical condition most of his life.

After Billy died, Carolyn discovered she had lost herself. For so long her sole responsibility had been her son, and her identity was based on mothering and caregiving. Afterward, she wasn’t sure who she was, but she knew she was not the same person. “As a caregiver, you feel like you’re not yourself. I was always, ‘Billy’s mom.’ I was rarely ever Carolyn. It was tough to find Carolyn again.”

Losing Ourselves

Caregiving can be all consuming. We built so much of our lives around taking care of our loved one that when he or she is no longer an active part of our lives, we are left with a gaping hole. The feeling of having nothing of you left after being a caregiver is common. Says grief counselor Alexandra Kennedy, “Caregiving is a time full of intense emotion because you’re dealing with dying and archetypal events. Then after the death, there is a letdown. You have this incredible sense of having been part of something so big and something so precious that in spite of the fact that it’s taken every ounce of energy, afterward, everything is gone.”

During your loved one’s passing, you may have let go of work and put relationship on hold. “Now suddenly you have to go back to ordinary life. There is a real sense of letdown, of 'Who am I now?' when before I was part of this very important thing that was happening,” Kennedy says.

Everything is Different Now

Caregiving is not just new or additional duties. It can mean a new identity or a different sense of purpose. Your caregiving role often took precedence over other relationships—to your spouse, employer, friends, parents, children or work. When our loved one is gone, we are left for a time between roles. The old patterns and priorities no longer apply but we’re not yet ready for new activities. Bereavement professionals call this phase of grief “reorganization.” It can mean feelings of numbness, searching and despair.

Getting Back to “Real” Life

When caregiving is over, other relationships that have been on hold may clamor for attention. Spouses, children, employers and friends may expect us to hurry up and get back “normal.” It is easy to feel overwhelmed by the backlog of things that needs to be done. Grieving caregivers can find themselves unable to focus. But life is not the same. We deserve and opportunity to what roles we want to reassume, and how we want to remake our identity and life.

Changed Priorities

Caregiving changes people. It’s hard to fill up a life again with people who have not been through what you’ve been through, who have not faced the hard issues of illness and death. Some caregivers find that after their loved one passes, they want to live more simply or authentically. Former caregivers might end marriages, quit jobs or get involved with causes aimed at relieving suffering. Many former caregivers volunteer for community programs, including providing respite care for other caregivers, visiting nursing home residents, or becoming mentors and companions.

“I Don’t Remember How to Take Care of Myself”

Self-care is critical to moving through grief. But when we have only ourselves to care for, it can be difficult to routines. For example, many people find it difficult to adjust to cooking for 1 after losing a spouse.

Grief counselor Martha Felber suggests little steps. Take short walks to regain stamina. Make a list of short- and long-term goals. Plan meals around your favorite foods. The discipline of physical exercise, of good nutrition and diet, can begin to take up those spaces that caregiving used to fill and lay the foundation for what is to come. Caring for oneself with time and patience also helps relieve depression and anxiety.

The Gift of Life

Alexandra Kennedy suggests that taking time daily to allow “the sense that your hands are empty and there’s nothing more to do” is the most important first step in filling out a life after caregiving. “Sanctuary”—as she calls this quiet time—gives us time to explore the inevitable changes in our values and priorities. It’s an opportunity to contemplate any unfinished business we may have had with the person who died.

“It’s okay to feel empty and alone and to not know who you are and where you’re going. A lot of people don’t realize the opportunity. All of these feelings are overwhelming, but you begin to cultivate the seeds of a new life from all emptiness. You really do emerge back into life with some sort of new creativity that needs to be expressed. It’s a place that is so much fuller because it embraces so much more of life. It’s almost as if our loved ones, in their deaths, give us the gift of life—again. And it’s our choice if we take it, the second time.”

Reconciliation

Alan D. Wolfelt, director of the Center for Loss and Life Transition in Fort Collins, CO, calls the idea of getting over grief a myth. “Everyone is changed by the grief experience,” he says. “For the mourner to assume that life will be exactly as it was prior to the death is unrealistic and potentially damaging. Recovery is all too often seen erroneously as an absolute, a perfect state of reestablishment.”

On the other hand: “Grief is a transformational process that makes possible huge shifts in who you are. You emerge so much bigger than who you thought you were, but you won’t get there if you don’t go through the feeling that you’ve lost yourself. It is a very delicate time; the identity builds again very, very slowly on all the emotions that are surfacing through grief.”

Wolfelt prefers the term “reconciliation” to define what occurs as the caregiver integrates the new reality of moving forward without the physical presence of the loved one. “As the experience of reconciliation unfolds, the mourner recognizes that life will be different. Beyond an intellectual working through is an emotional working through. What has been understood at the ‘head’ level is now understood at the ‘heart’ level.” Then, he says, commitments to the future can be made.

This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.